Hi everyone.
Good news: after a wait of exactly 20 weeks, I finally have my 1st appointment to see a neurologist!
I want to make sure I get the most out of it that I possibly can. Is there any way I can prepare for this, any information it would be good to take with me, or any other general tips?
How did your first neuro visits go? And what happened next?
Thanks.
I went into my first neuro appointment completely unprepared, but it went fine. I think most do, tbh. But I’d always recommend being prepared, simply because it can be tricky to remember everything if you aren’t!
This is a copy and paste (with a bit of editing) of a post I did a while ago on the same topic. I hope it helps.
Karen x
These are the things that I think help at a first consultation:
No.1: Be prepared! (It’s always best to have something and not need it than need it and not have it!)
Be able to tell the neuro your medical history, any neurological illnesses in your family (if asked) and your symptoms in a succinct, objective manner. Prepare a list / aide memoire to help you. Do not prepare lists with loads of details over loads of pages: the neuro will most likely only want a topline summary / headlines. If they want more info, they’ll ask. A good list will be chronological and focus on the main symptoms. For example, April-May 2008: optic neuritis (recovered); January-March 2009: numbness from waist down (recovered, but residual problems in right leg); September-December 2010 (some recovery): incontinence, spasms in legs, shooting pains in legs; June 2011 (ongoing): terrible fatigue, deterioration in walking, some cognitive difficulties. If there isn’t a history like that or this is the first time this kind of thing has happened to you, then stick to a simple explanation – when it started, what the main symptoms have been and how they progressed, if anything has gotten better since. For example, March 2012: woke with tingling in legs. Developed to legs, torso and back over 2 week period. April: extreme fatigue; tingling areas now buzzing, itching and hypersensitive too. Now: all of the above plus blurry eyesight.
Take a (short) list of questions if you have any.
Take a list of symptoms that you are struggling with so the neuro can advise re meds or therapy.
No.2: Do not hand over lists unless you really can’t talk through things yourself. If you do hand something over, do not speak until the neuro has finished reading it (or asks you a question - once you’ve answered it, be quiet again if there’s more to read). If you are planning on handing anything over, keep a copy for yourself.
No.3: Be honest. Do not exaggerate and do not play things down.
No.4: Take someone with you if you can. It is really helpful to have another pair of eyes and ears there so there’s a better chance of remembering what happened and what was said. The other person can also help to jog your memory if needed.
No.5: If the neuro’s taking notes of what you’re saying, give him enough time to keep up and get things written down properly.
There really is nothing to be concerned about. The goal of an initial consultation is for the neuro to work out what the most feasible explanations for your symptoms are, and to order suitable tests. To do that, he/she needs to know your history and the results of a clinical exam. The only bit that you can help with is the history. So that’s your contribution: to provide the information that the neuro needs. This isn’t too hard - after all, it’s all about you! A list / aide memoire can help to keep you from waffling or missing out something important though.
Hi Dave, yes everything that Rizzo says!
I would only add that I felt disappointed after my first neuro visit. I suppose I expected a diagnosis or something there and then. I think a lot of people feel the same. I came away feeling that in fact all I got was a referal for MRI and ‘we’ll see you again in 6 months’.
Little did I realise that that was actually a very positive outcome. I had not been dismissed. So be very open minded and don’t expect too much from first visit.
Good luck,
Pat x
Yep, gotta agree with Rizzo 
Would also add that dont expect to get a diagnosis this first time. My neuro is doing lots of tests on me at the moment and hopefully I will know whats happening on Sept 25th my second neuro appointment. Some people have a lot longer to wait for a diagnosis though.
Dont be worried about the appointment Dave. You will probably have some reflex tests etc but they are all fine.
Keep a diary beforehand, write down questions you have, and be honest about everything (however embarrassing!) and take someone with you into the consultation as they can remember things you forget.
Good luck Dave and I really hope it all goes well for you
P xx
Hello, I have my first Neuro appointment in October. I hope all goes well for you. I am nervous but will get a list ready and keep it as succinct as possible as Karen suggests. Good luck Sam
Hi Dave - good advice already. I would like to add ask for a copy of the letter your neuro will send your GP. Also I have a list of questions and I write the neuros answers down before I leave as sure as eggs are eggs if I don’t I will forget. I also if the neuro hasn’t ask my husband if he has any questions for neuro as bloody disease affects him too. Also if you disagree with something neuro says then challenge . Easier said than done. But over time and and the more appointments you have it will get easier. Also I almost forgot I used to probably still do get frustrated with neuro putting my ms symptoms down to me being hypersensitive and blaming everything on ms. Appointments in my experience can run late I have sometimes waited an hour to be seen. Even so don’t feel that you have to rush your appointment because they are running late. You have waited 20 weeks so deserve as much time as you need. I once also had the unfortunate experience of being fobbed off onto a more junior doctor not the consultant. Probably was a very good doctor but I wanted to see the consultant so said so and I did - had to wait a bit longer though I have 6 monthly follow ups Hope this helps Hugs Min xx Hope this helps Hugs Min xx